On the Description of Parkinson's Disease in Jonathan Franzen's

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Article: Rutter, B. orcid.org/0000-0003-0466-4923 and Hermeston, R. (2019) The space between words: on the description of Parkinson’s disease in Jonathan Franzen’s 'The Corrections'. Medical Humanities. ISSN 1468-215X https://doi.org/10.1136/medhum-2018-011536

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The space between words: on the description of Parkinson’s Disease in Jonathan Franzen’s

The Corrections

ABSTRACT

Disability or health-related literature has potential to shape public understanding of disability and can also play an important role in medical curricula. However, there appears to be a gap between a health humanities approach which may embrace fictional accounts and a cultural disability studies approach which is deeply sceptical of fiction written by non-disabled authors. This paper seeks to reconcile these perspectives and presents an analysis of the language used by Jonathan Franzen in his description of Parkinson’s Disease in the novel The

Corrections. We use detailed linguistic analysis, specifically stylistics, to identify the techniques Franzen adopts to represent aspects of impairment and disability. We describe four specific linguistic devices used in the novel: reflector mode, iconicity, body part agency, and fragmentation. We show how stylistics offers a unique analytical perspective for understanding representations of disability and impairment. However, we emphasise the need to promote critical and even resistant understandings of such representations and we discuss the potential role of patient/service user input to assess fictional accounts.

INTRODUCTION

The novel The Corrections [1], by Jonathan Franzen is considered a classic of contemporary literature. One particularly striking aspect of the novel is the character Alfred Lambert who, as the novel unfolds, is depicted experiencing symptoms of Parkinson’s Disease. In this paper we explore the description of Alfred with two purposes. The first is to attempt to reconcile a

1 difference between approaches in cultural disability studies which are deeply sceptical of fictional accounts of disability by non-disabled authors, and a medical humanities approach which has sought to utilise fictional accounts of disability or illness in the education of students and in reading group therapy. The main purpose of the paper, however, is to consider in detail the language Franzen uses to represent the experience of Parkinson’s Disease and to assess it in light of this tension. We focus on three key areas: expressive communication, tremor, and swallowing. We use a method of analysis that can be broadly identified as stylistic, bridging literary analysis with detailed linguistic analysis. This fine-grained, micro analysis of specific sections of the book allows us to see in detail how Franzen uses language to represent Alfred’s experience of Parkinson’s Disease. We propose that Franzen’s linguistic choices enable him to present Parkinson’s Disease in a way that is markedly different from more traditional medical terminology. Moreover, we discuss the potential benefits for medical students and persons such as those with Parkinson’s Disease in reading, and critiquing, novels like The Corrections for both their descriptive power and their controversial position. We will argue that such benefits may be enhanced where patient/service user reactions to texts are taken into account and the texts provoking such reactions can be understood using the linguistic tools we are developing.

THE CORRECTIONS AND CONTESTED REPRESENTATION

The Corrections was published in 2001 and has garnered widespread attention. It was

Franzen’s third novel and received the National Book Award in 2001 and was a finalist for the

2002 Pulitzer Prize. It was later adapted for radio by BBC Radio 4 in 2015. It revolves around a family who are preparing to spend a Christmas together in New York amidst a series of ongoing personal and familial challenges. One particularly noteworthy aspect of the novel is the character Alfred Lambert, the father of the family. Throughout the novel Alfred is depicted

2 as having a number of difficulties relating to cognitive/motor function and depression. We estimate his age to be 65. He is a Kansas native and a retired railroad engineer. Franzen’s account of Alfred’s health and disability is a complex one. He is referred to throughout the novel as having Parkinson’s Disease (p.64, p.122, p.428) and there is also some reference to

‘depression’ or ‘clinical depression’ by family members (p.179. There are also some implications he may have early Alzheimer’s Disease (p. 465). Late in the novel (p. 564) Alfred receives a confirmed medical diagnosis of parkinsonism, dementia, depression and neuropathy of the legs and urinary tract and subsequently dies. The Corrections has received attention in medical literature. In his 2005 textbook Fractured Minds[2], Ogden recounts reading The

Corrections without prior knowledge that a character with Parkinson’s Disease featured so heavily. Ogden speaks positively of the accuracy of the description Franzen offers: “Franzen seems to be aware of many of the issues surrounding Parkinson’s – either he’s done his research or he has encountered the condition in his personal life.” Ogden is likely correct and there is some indication that the description of Alfred, at least those aspects of his character related to

Alzheimer’s Disease, is in-part inspired by or based on Franzen’s own late father, Earl Franzen.

Franzen wrote an essay for the New York Times in 2001 entitled My Father’s Brain in which he describes his father’s death following Alzheimer’s Disease[3].

The medical humanities have embraced the use of fiction, both in the education of medical students, in its use for bibliotherapy and in an approach to a literary analysis of such texts, known as pathography[4]. Indeed there has been an increased emphasis on the humanities and arts in medical curricula[5-7]. Along with patient/service user testimonies or stories, many researchers argue that fiction/literary-focused medical humanities can be an important way of understanding lived experience[8-10].

3 The use of fiction in medical humanities, despite the discussion above, may be problematic from a disability studies perspective. This emphasises the cultural construction and marginalisation of disability as abnormal and other[11-12]. Mitchell and Snyder in their highly influential work note that representations of disability in literature are ubiquitous[12].

Frequently, nevertheless, the authors of novels are not themselves disabled and lack real experience of disability. In turn, representations are very often inaccurate, and may provide

‘stock’ characters or metaphorical depictions of disabled people which symbolise individual or social failings[12] (cf [13]). Related to these points, disability may serve as a plot driving device – frequently a deviance to be resolved by cure or death[12]. Thus Burke notes that the field of cultural disability studies is based on suspicious readings of texts, their language and the metaphors that they utilise[14].

The use of novels within medical humanities may therefore sit uncomfortably with disability studies scholars. Indeed, more broadly, researchers have identified a historical gap in understanding between disability studies with its emphasis on the social and cultural construction of disability and a greater focus on the body in the medical humanities, one that seems only recently to have begun to be bridged [15-16]. This reflects a wider issue of contrasts between a medical model of disability which sees it as a set of individual impairments in need of cure and a social model which distinguishes between impairment and disability, the latter being constructed by disabling barriers, attitudes, culture and so on [17]. We should state that in this article we adhere to the definition posited by Shakespeare which acknowledges that disability is a combination of impairment along with social and cultural factors [18].

Those seeking to promote understanding of the social and cultural dimensions of disability in medical humanities often emphasise the importance of first-person autobiographical accounts

4 [16,19]. Nevertheless, our contention is that popular or acclaimed fictional narratives have an undeniable and powerful role in shaping beliefs about disability (cf. Hall [20]) and if used critically, may aid the medical humanities at a range of levels. Where fictional narratives written by highly skilled writers have some accuracy (assessed by medical experts and service users), these may offer a unique way to help medical students and those service users to understand disability in ways that are not captured by conventional medical labels and descriptions of medical symptoms. However, in addition, if read and introduced critically they may play a crucial role in aiding understanding among students and service users of problematic issues in the representation of disability and its cultural construction. In other words, such texts may describe disability in highly articulate ways that disabled people do or do not recognise, but in addition, on closer critical inspection the cultural imprints that construct disability and indeed the marginalisation of disabled people may be revealed. The latter may raise awareness among students and aid disabled people to resist such constructions.

The Corrections is an acclaimed novel and one that is been widely read. It has received praise for its depiction of issues surrounding Parkinson’s Disease [2] and we feel that the novel has some accuracy in its descriptions of health, illness and disability. Likewise, we will provide evidence that the novel can also be read critically for its presentation and construction of disability, as our discussion progresses.

It remains for us to state that texts describe and construct disability through language.

Hermeston [21] (cf. Burke [14]) has pointed out the preoccupation with language in disability studies and the importance of a stylistics of disability to understand in detail the description and construction of disability that one often finds, for instance, in novels. We propose that stylistic analysis will aid us in understanding these descriptions of disability, the descriptions

5 in their context of cultural construction of attitudes towards disability, and also service user reactions to texts in reading groups. This will be a crucial dimension in future work to understand in detail how texts have their effect.

LINGUISTIC ANALYSIS

The first passage we focus on comes early in the novel. It is the closing act of the first chapter and is important for establishing Alfred’s difficulties in the area of expressive communication.

Communication difficulties (e.g. stammering, aphasia following stroke, or speech disfluency secondary to acquired neurological conditions such as Parkinson’s Disease) are often very difficult to capture linguistically. Formal diagnostic labels such as anomia, dysarthria, and aphasia are rarely if ever used by those experiencing them and instead speech and language therapists and physicians are often met with widely varying metaphors capturing time, space, motion, frustration or discomfort. In this passage from The Corrections Franzen employs a highly stylised and elaborate linguistic approach to describe Alfred’s experience.

Alfred is in the master-bedroom of the family home when his wife, Enid asks him what he is doing. Franzen begins describing Alfred’s response thus:

(1)! He turned to the doorway where she'd appeared. He began a sentence: "I am - " but when he was taken by surprise, every sentence became an adventure in the woods…

What ensues is a very long, multi-page sentence depicting imputed word-finding and sentence construction difficulties along with a sense of time being frozen or stretched out. Franzen achieves this using the elongated sentence to evoke a metaphor of Alfred being lost in the woods. We can see the sentence as what narratologists call stretching in which description of

6 action is slowed down by, for instance, accounts of states of mind, that nevertheless contribute to the action[22].

Stylistically, the 'woods' sentence is written in reflector mode, a technique by which a third- person narrator has privileged access to the 'active mind' of a character[23]. It is clear also that the episode and the image of woods are intended to operate as an overt metaphor for Alfred's imputed word-finding and sentence construction difficulties. Quite simply, woods are depicted as a place in which Alfred feels lost and disorientated.

(2)! …as soon as he could no longer see the light of the clearing from which he’d entered, he would realize that the crumbs he’d dropped for bearings had been eaten by birds…

The concept of iconicity captures the idea that structures in language can convey symbolically something of the themes being dealt with[24]. The structure of this extremely long sentence is intended to represent iconically the metaphor of the disorientating woods and the word-finding and sentence construction difficulties they in turn symbolise. Like a wood with many confusing pathways the sentence takes a meandering grammatical trajectory full of detours into detail. It is worth noting the sentence is three hundred and forty words long and it is highly complex in both the grammatical and everyday sense. The sentence contains nine main clauses but thirty- seven embedded clauses. Clauses, in this sense, refer to the conjoined constituents, each usually containing a verb, that together make up a sentence. The effect of the embedded clauses in particular is to give the impression of the sentence having the meandering structure in which readers, like Alfred, can become lost.

As noted, the passage is in reflector mode and the evidence for this in fact reveals more about

Alfred's imputed tenuous grasp on reality. We see the world from Alfred's point of view

7 spatially and temporally. Simpson[23] argues that spatial and temporal point of view are part of point of view on the psychological plane. Our psychological insights into Alfred are enhanced through the use of temporal and locative expressions - those giving a sense of awareness or experience of time, and space or position.

There is actually a blurring of the spatio-temporal from Alfred's viewing position. Again, this is achieved through the use of spatial and temporal terms and markers, but also their juxtaposition and merger. Hence. the movement into the woods previously mentioned is represented in terms of time in addition to the physical, and he becomes lost when he can 'no longer see the light of the clearing from which he'd entered'. There is a shift back into boyhood memory, but then a reference to his 'entire adult life'. After this there is further distending of time:

(3)! …; but in the instant realizing he was lost, time became marvellously slow and he discovered hitherto unguessed eternities in the space between words and could only stand and watch as time sped on without him…

Hence entry into the woods is represented with expressions that emphasise Alfred's viewing position spatially and in relation to his perception of time. We actually have a juxtaposition and blurring of reference to time, the spatial and also to language in this quotation. The

'eternities' exist inside the 'space between words'. Time moves physically. Alfred watches the rapid movement of time away from him. Later still he can only 'stand and watch' his boyish self 'crashing on' till he is 'out of sight'. And he watches to see if the ‘panic-stricken little boy’ will 'blunder into' a clearing 'where’ Enid is ‘waiting for him'. Of course, in reality it is the grown-up Alfred whom Enid is waiting to complete a sentence. Note also that it is the panicked little boy part of Alfred's temporally split self who does not know 'at what point he'd entered the woods of the sentence'. All of this gives a sense of disorientation for Alfred represented

8 spatially and in time. And yet this is intended to be symbolic of the search for words, the time that elapses as a search goes on. Hence reference to language too is merged with the account.

The apparent difficulty in keeping a firm hold on time, is underlined by Enid interrupting a memory of a medical diagnosis and reminding Alfred of what day it is. Nevertheless, it is important to note that this has been achieved at a level which blurs the reader’s grasp on

Alfred's reality too. We share the disorientation.

Coupled with Alfred’s imputed difficulties in focusing on time is his relative passivity in the metaphorical woods and by extension in word finding. Use of the passive voice (incorporating the verb BE + Past Participle) is actually quite rare in the sentence (although crucially it is used idiomatically in the clause ‘he was taken by surprise’, which initiates the passage in which he has left a clearing and entered the woods/or a phase of inability to speak. Nevertheless, despite some purposeful behaviour being related in relation to Alfred it is striking how lacking in purpose or agency he is in the sentence. This is tied skilfully to the eventual utterance that

Alfred does make. He watches (merely sensing) to see if his split boyish self might:

(4)! …despite no longer knowing where he was or at what point he’d entered the woods of the sentence, still manage to blunder into the clearing where Enid was waiting for him, unaware of any woods – “packing my suitcase,” he heard himself say.

We do not propose to engage in a detailed analysis of transitivity, of which the actual passive voice is only one element, and thus the range of categories (or processes) into which verbs and their clauses can be divided in relation to comparative agency – the relative ability to perform or do a given activity[21,25]. Nevertheless, Alfred’s watching can be perceived as being relatively inactive, and the boy’s possible blundering would be an unintentional action.

Meanwhile, we can note that Enid is purposefully waiting for Alfred to speak (metaphorically

9 in the clearing that might afford verbal clarity to Alfred). Subsequently, however, Alfred is merely depicted as hearing himself speak. Hearing is a relatively passive activity and what he hears is only a disconnected self-speaking, afforded by the use of the reflexive pronoun

‘himself’. The sense is that he does not actively control the utterance that he makes. Again, we have the sense of passivity. The disconnection that Alfred experiences with himself is, in fact, manifested in a variety of ways in various passages. As we shall see shortly, this includes a fragmented representation of the body and its activities.

Taken as a whole the sentence is a highly stylised written representation of a complex phenomenon. Word-finding difficulties are often classified clinically in speech and language therapy using the diagnostic label anomia or more specifically word-selection anomia[26].

They are commonly associated with aphasia, a language disability following stroke, and also dementia. The contrast between the same phenomenon being captured on the one hand with a single word or phrase, and on the other hand being depicted using a multi-page sentence is striking.

This is, of course, a literary attempt by Franzen to represent an experience of difficulty in communication. Nevertheless, there is perhaps something of a popular understanding of word- finding and sentence construction difficulties at work here, which does have some accuracy, especially in relation to disorientation. It is interesting to note that Rummins, in her book describing her experience as a person with Parkinson's Disease, similarly discusses such issues:

I lose words and, harder to explain, I also lose my direction when I am trying to give

an account of an incident or to argue a point. It could be said that my grip on the

sentences I am trying to generate becomes tenuous. This feels like my physical

10 tendency … to lurch and to veer off course when attempting to walk in a straight

line[27].

The two textual examples given are hardly definitive evidence. As noted above, however, speech therapists are often met with metaphors from persons with communication difficulties capturing time, space, motion, frustration or discomfort. It should be remembered also that there are quite conventional metaphors in English relating to being lost for words, losing a train of thought, of long and rambling sentences, of wordy sentences being akin to undergrowth.

Scholars argue that metaphor can reflect and shape our belief systems[28-30]. We appear to conceive of language in popular culture in terms of words as objects and sentences or arguments as having or lacking direction, or organic things representing complex structures including language[28]. Nevertheless, passivity or at least imputed lack of voluntary control is another factor to which we have also alluded. This relates not just to word finding difficulties

(at least as Franzen describes it) but also physical behaviour. We shall deal with this now.

The next extract we look at describes another common experience of Parkinson’s Disease: tremor, particularly of the hands. This is alluded to by Franzen a number of times throughout the novel but is perhaps most notable in the following rather negative extract:

(5)! His affliction offended his sense of ownership. These shaking hands belonged to nobody but him, and yet they refused to obey him. Irresponsibility and undiscipline were the bane of his existence, and it was another instance of that Devil’s logic that his own untimely affliction should consist of his body’s refusal to obey him.

Franzen represents tremor in an episode in which Alfred, again the reflector, ponders his hands.

The focus on physical characteristics in descriptions of disability is common[31] and is akin to

11 the fragmentation found in description of the female body[21,25]. In the case of disability, it may fulfil a desire to interrogate and describe the disabled body[21]. Of course, it can also be used to draw attention to specific ‘differences’ in bodily behaviour. There is an obvious metaphor of the hands being like disobedient children and this recurrent allusion to childhood

(as with the woods episode) may be an analogy for imputed lack of physical and mental control.

However, if in addition we simply think of literal hands it is noteworthy how often they are the

'do-er' (or not as the case may be) in sentences. Hence, 'they refused to obey him', 'the more sternly he gave orders, the less they listened and the more miserable and out of control they got'. It is noticeable also that Alfred contemplates 'his body’s refusal to obey him'.

These are examples of body part agency, to which fragmentation is clearly related here. The body (or parts of the body) act, or do not act, of their own volition. Stylisticians using the analytical framework of transitivity have discussed the implications of such agency.

Toolan[32] notes that it can give a sense of a disconnect or 'alienation' between an individual and their physical body - a sense of ‘diminished responsibility'. Franzen as a writer seems intuitively to understand this potential literary effect as he chooses to represent a man whose body does indeed not behave in an expected or controlled manner. With the attribution of childlike qualities overlaid upon his hands, of course, this is all the more pronounced to give the impression of an 'unruly body'.

Our final extract relates to issues with swallowing. Alfred is eating bread.

(6)! The crust cut his gums, but he kept the whole thing in his mouth and chewed carefully,

giving his sluggish tongue wide berth.

12 Once again, we are in reflector mode and we again see a tendency to fragment Alfred’s body: he cannot control the ‘unruliness’ of his ‘sluggish tongue’. The latter must be given a ‘wide- berth’ and yet is central to eating and swallowing. Alfred is aware of this and depicted as fearing it.

(7)! There were chapters in Hedgpeth’s booklets that even Alfred, fatalist and man of

discipline that he was, couldn’t bring himself to read. Chapters devoted to the problems

of swallowing; to the late torments of the tongue; to the final breakdown of the signal

system…

It is true that ‘discipline’ seems to be valued particularly by Alfred – something we have seen in relation to his ill-behaved hands and the present quotation. The present study is focused on the depiction of impairment and disability rather than individual characterisation per se. While

Alfred clearly fears difficulties in swallowing, again we see the body depersonalised and fragmented with the focus once more on the “tormented tongue”. Indeed, the final stages of

Parkinson’s Disease are perhaps depicted here as dehumanising with a machinery metaphor utilised in terms of a failing signal system. Regardless of Alfred’s character being a retired railroad engineer and having a neurological impairment this metaphor of breakdown is perhaps one logical extension of depersonalisation and fragmentation.

DISCUSSION

We have presented a detailed, fine-grained linguistic analysis of three passages from The

Corrections by Jonathan Franzen. Our analysis is stylistic in nature and we have focused on

13 Franzen’s descriptions of Alfred Lambert as having difficulties in the areas of word-finding, tremor and swallowing.

We have highlighted a number of linguistic devices used by Franzen to represent Alfred’s experiences but four in particular stand out: the use of reflector mode, iconicity, body-part agency and fragmentation. It must be said that, as aspects of style, all of these can carry with them the ability to describe disability, but also the ability to disempower or carry ideologies.

Simpson [23] refers to ideologies as sets of apparently common-sense beliefs held within society, beliefs that can be dominant when widely propagated through powerful institutions such as medicine. He has noted also that a style involves ‘selections from a pool of available options’ and ‘privileges certain readings, certain ways of seeing things, while suppressing or downplaying others [23]. It is crucial to remember that the representations given are thus choices that may carry assumptions about the appropriacy of representation itself, and may carry ideology. Hence, we consider the techniques we have described in turn both in terms of their descriptive power but also with a more resistant critical perspective towards language that reveals the construction of meaning and ideology as envisaged by Fowler [33].

Reflector mode, the means by which a third- person narrator has privileged access to the 'active mind' of a character[23], is used often by Franzen. It permits the narrator to mediate the inner thoughts and perspectives of Alfred, a character often depicted as unable to communicate these thoughts. The representation of those who cannot speak fully for themselves raises ethical issues [14], yet Bérubé is clear that those who cannot narrate for themselves should not be left silent or un-narrated and that at the very least the representation of their minds sheds light on narrative itself[34]. From a critical perspective, it should be remembered that Franzen’s use of reflector mode is a narrative choice to assume the right of representation in a manner by which

14 the narrative voice merges with the thoughts, perceptions and experience of a character. This permits great flexibility for the narrator but also great power and control over the manner in which imputed experiences are depicted.

Iconicity, the idea that linguistic structure itself can convey symbolically the themes dealt with, is evident throughout the first passage analysed dealing with word-finding issues. Sentence elongation and the multiple embedding of clauses is used by Franzen to capture time drastically slowed down. Related to the above point, the effect is a powerful one as it serves to take the reader on a journey - representing the internal thought processes of Alfred in what is in fact only a matter of seconds. We have contrasted this with the more formal diagnostic term anomia commonly used in speech and language therapy. Perhaps, it serves to convey something of the experience of Parkinson’s Disease and related issues. Yet again, however, this is a linguistic choice on Franzen’s part. Would someone with Parkinson’s Disease actually experience all of these rambling thoughts and detours afforded by the highly complicated sentence? For artistic effect, Franzen decides here that Alfred will do so.

Body part agency, as noted, describes a method of description whereby the body or parts of the body act (or fail to act) of their own volition. We see this and the related phenomenon of fragmentation in the depiction of Alfred’s disobedient hands. Likewise, we see fragmentation in the passage describing him eating. Of course, these are intended to account for the manner in which Alfred is depicted not having control of his body. However, this also carries with it the danger that Alfred is not viewed as a whole or complete person in such scenes and we have also seen the potential dehumanising effect of the machinery metaphor. Likewise passivity, connected to all of this undoubtedly carries the negative message of Alfred’s failure as a human being.

It seems worth noting also, that there is an infantilising tendency in all of the passages discussed. Alfred is a boy lost in woods, with a reference to the fairy tale Hansel and Gretel when birds eat breadcrumbs laid down by him. In the episode about his hands, these behave like ill-behaved children. The passage related to eating is reminiscent of childish play eating.

Prior to putting the bread in his mouth, it is an unstable ‘butter-sailed schooner’. Infantilisation then, is a recurrent technique used by Franzen to convey the disabling or imputed regressive tendencies of Parkinson’s Disease. This, of course, carries the possibility that Alfred at times ceases to be seen as a human adult. More broadly, it might be recalled also that disability is often used as a metaphor for social or other types of collapse or as a plot driving device[12]. It may be the case that Franzen’s novel falls into such a category with Alfred’s unruly body and communicative difficulties representing wider familial, economic and social challenges. His death towards the end of the novel might likewise be read as a metaphorical plot driving device for various forms of ‘correction’.

CONCLUDING REMARKS

Cultural disability studies scholars frequently identify problems in the representation of disability in novels [12-13]. They may nevertheless recognise the potential benefits of first- person autobiographical narratives for use in medical humanities to educate students and aid service users [17,19]. Yet, one of the strongest claims made in medical humanities relates to the role fictional literature can play in shaping understanding of health and disability [4, 35].

Certainly, the benefits of a wider approach to learning about health and disability for students and practitioners have been strongly argued [36].

16 We have suggested, despite a range of controversies, that with varying degrees of accuracy fiction may be helpful to give insight into the experience of disability, but that it also has power when read critically to inform readers about the socially and culturally constructed nature of disability. We believe that this knowledge is important to medical students and service users.

Likewise, we propose that bibliotherapy and reading groups involving those with Parkinson’s

Disease might take into account problematic literary issues, whilst emphasising the role of people with such impairments in evaluating and critiquing literary depictions for their appeal

(or otherwise), their accuracy, and their representational power or worth. Indeed, we believe that a knowledge of service user reactions to such depictions combined with a stylistic analysis that considers the language that facilitates these reactions could aid in the further development of bibliotherapy and reading group therapy that more effectively empowers those with

Parkinson’s Disease or other disabilities. This may help them to understand their disabilities at a range of levels and enhance their ability to resist potentially harmful cultural constructions.

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